Monday, July 12, 2010

Down Syndrome, Off The Clock

They make, if not the best, a very serviceable eggplant parmigiana. We don't go there often, but when we do, we each always get lunch from the same vendors. As they are at the start of the food court, we grab a table right at the entrance. It's perfect for people watching, eavesdropping and is almost always the source for amusement. The parmigiana comes from the vendor right at the start of the court, Joe gets soup from the vendor next door but one. I grabbed a table just two in, with a chair removed, there is enough room for me to pull in and be out of the way.

We'd just sat down for lunch when we both heard that pronunciation of the word, 'Mother' that communicates so much. 'Muhhhhh-therrrrrr'. I glanced up and saw a frustrated and harried woman, carrying packages from the Bay and her son, a young man with Down Syndrome who was in his pre-teens.

Of course, I listened.

(Realize that I would have listened irregardless of the boy's Down Syndrome. I would have listened if it was a couple having a spat, if it was a businessman mumbling to himself, if it was someone having an animated conversation on a cell phone. That's what I do.)

So, aside, aside, I listened.

It seems that the mother wanted to go with him to get his food and then have him go with her to get her food, then they would eat together. Son, thought this was silly. Why doesn't she get hers, he get his, then they meet for lunch. She did an admirable job of keeping herself calm. I did an admirable job of just listening, not judging. Who knew what kind of experiences she'd had that led to this arrangement? They had been standing arguing and just before she moved again towards the court he said something that had a profound impact on me as a listener and she as a mother.

'Trouble is you think I have Down Syndrome all the time and I don't,' he said with real frustration.

She stopped again, 'What?'

'I only have Down Syndrome sometimes, when I'm learning something new or if the words are real hard. I don't have Down Syndrome the rest of the time when I'm doing what I know how to do.'

'And you don't have Down Syndrome now?' she asked.

'No, I know how to get my lunch, I buy my lunch at school all the time. I don't have someone with me all the time you know.' he was frustrated, he didn't even realize he'd said something of real importance, to me and to his mother.

'So,' she continued looking at him hard, 'you don't feel like you have Down Syndrome all the time.'

'No, most times I don't even think about it,' he said.

She said, her tiredness seemed to be gone, 'Go ahead, we'll find a table after we've got our food.'

They disappeared from view.

Joe and I looked at each other. I said to him, 'That kid should teach classes to parents of kids with Down Syndrome.'

On our way home, chatting about just stuff, I realized that at that moment I didn't feel disabled, it wasn't part of my consciousness. I knew that everyone saw me in my wheelchair but what they saw, what they thought, didn't impact what I felt. I'm only disabled sometimes, when things are out of my reach, when aisles are too narrow, when a curb blocks my way. The rest of the time I'm just - me.

65 comments:

OMG! That boy DID just teach a class to us parents of children with DS! I am crying here.... I am just sooo proud of that young man...for the fact that he had the skills to advocate for himself....for the fact that he had the skills to advocate for himself with his PARENT...and for the fact that he had the verbal skills and self awareness to explain exactly what he was thinking/feeling. I am also happy that the mother stopped, listened, & let go.

Hope you don't mind, but I am sending all of my DS Mom's here to read this (I do many times anyway).

WOW! My professional work is with elders and this is a great way to express their dilemma - that they don't FEEL old or think of themselves as old all the time, but people treat them as if they are old (and therefore, automatically irrelevant) all the time. Personally, it makes sense too - I am aware of the effects of my mental illness mostly when I am doing something new and the symptoms get in the way, slowing me down. Thanks for sharing the story, and to the boy and his mom. Much wisdom for a Monday morning.

Marginally related but humorous: we were in a restaurant yesterday and heard the following exchange between a mom and 5ish year old boy walking past our table:Boy: How the hell do you eat a bear?Mom (startled): What?!?Boy: HOW THE HELL DO YOU EAT A BEAR?

What an amazing moment! a terrific lesson for his mom and, thanks to you telling blogging about it, the rest of us. I can imagine that pretty much anybody who's put in a box labeled "can't" (whether it's old, disabled or whatever else you can think of) feels that way.

Hey I was sent this link from a friend and man you nailed it! I to am in a wheelchair do to a motorcycle accident. But that may have been the best, and most eye opening thing that I have read since my accident. Its so true, I'm still me, that smart ass 26yr old that scopes out women! But its kinda hard to get dates when you say, hey my mom and I will pick you up at 8! Yes I dont drive (yet)! I dont feel disabled either until it comes to something I can't reach or open. Now to just educate the rest of the world to stop starring like we're the freak show!

Thanks for sharing this story. It taught this mom something too. I have a 7 year old daughter with Down syndrome. I think our children may understand their disability better than others give them credit.

Thank you so much. My daughter is 10 with DS and I never think of her having a disability. In fact we recently had to go to the ER for stomach pains and I totally forgot to tell the doctor that she had DS. Later she made a comment about her eyes and I said she has DS and the doctor said "Next time you need to tell us even if you pull the person aside to tell them" It is not something I am ashamed of, it is just something I don't think of when it comes to her. So thank you so much for posting this!!! I will use this story in the future.

I don't understand why that doctor thought he needed to know about your child's DS before he could talk about her stomach pains! What does DS have to do with stomach pains?! Why is that automatically always supposed to be pertinent information?! That doctor is exactly the sort of person who should be reading Dave's story.

I coordinate a national leadership training in Louisiana that empowers self-advocates and parents of young children to effectively meet with local, regional, state and national leaders to make systems change. I am constantly reminding the parents that we cannot be part of the problem. We have got to allow our children to grow up and make decisions. Thank you Dave and thank you to the self advocate who let his mom know he can do it, just give him the opportunity.

Oh, I love this. While my daughter is still only 4 years old, I feel like I learn so much from the older children with Ds and from the parents of older children with Ds. You overheard an incredibly touching, teaching moment for that mother. Thank you for sharing that.

Isn't it great when kids are just kids? All kids go through the "I can do it myself" bit about different things, at different times, in their lives. That kid may have DS but really, he is just another kid. And that's the lesson I take from this.

ANDREA, The doctor needs to know because diagnosis-making is very complicated, and knowing that a patient has DS may help point him in the right direction. AND DS IS very MUCH CONNECTED WITH THE DIGESTIVE SYSTEM, THERE ARE MANY THINGS THAT A PERSON WITH ds IS MORE AT RISK FOR THEN SOMEONE WHO DOES NOT HAVE DS. As the mother of a 15 year old with DS, it was heartening to read the story, but... sometimes SOMETIMES it can be a real battle for the parent. If your child knows something, fine and good. But there are times that my daughter is in such a hurry to be independant, and not to hear anything from me, that she refuses to wait for even a moment of instruction from Mom before trying something entirely new. I have to stop her, and explain that this is something new, and that EVERYONE needs explanations before doing this the first time. So Dave, thanks for giving the mother the benefit of the doubt at first, and not being judgemental. Because sometimees it is damned scarey to send your kid out alone to do something, even if you are pretty sure that they can manage. There are so many small, uncertain factors in life. [Example: Ricki knows the bus route to place X. She knows how to use a ticket. I always let her manage on the bus alone when I am with her, and we often sit apart from each other. BUT.... while I HAVE let her ride the bus alone at times, my heart is in my throat still when I do. She can maage if everything goes by the "script". BUT what if the script changes? What if the bus breaks down, and everyone has to catch a tramp on the next bus that arrives? Or what if someone starts up with her? (I have told her repeatedly in such a case to go to the driver, but I do not know if she really WOULD. She is an agressive young lady, and would probably yrll at them...)Or.....whatever. It is DAMN scarey, and that question of how much to shelter one's child, and how much to allow (AS WITH ANY TEEN BTW)is as difficult as can be. Thankfully, Ricki is pretty determinded, so she pushes her way to independance pretty well.....

Thanks for evesdropping, Dave. That was a great story. I'm a dad of 2 kids with DS and often find myself really looking at them and wondering if people recognize them as having DS because it is hard for me to tell a lot of the time.

Hi Dave,This is an inspiring story for any one with extra needs, regardless of the issue. My kiddoes are on the autism spectrum and one day they will be grown-ups and on their own. Somehow, I have to let go and let them be. Que Sera sera-:) Thanks for posting the story!

Great story and a great lesson for me -- Mom to 5-year-old identical twin boys with DS. Not a moment too soon. I've always been good with allowing them the dignity of risk... this pushes that notion a step farther and lets them be just who they are and not a kid with Down syndrome ALL the time. Can I share it on my blog? How do I get your permission to do so? (I saw you have a creative commons statement... so I'm asking before doing.)

OMG..(I see the first comment and I am if anything, not original)I am bawling. I now am able to realize how I feel NOW. I was in KS 4 yrs where I was finally diagnosed high on the autism spectrum. (hrmph. It bites) I learned me. I learned how to deal. I felt normal and scared due to physical disabilities too. (part time wheel chair use on bad bad days and bad area et) Now I am disabled all the time. I can't regulate anything. And I know how but I live with my Mom. 40 yrs old and back at home, It was really a dream come true turned nightmare. I have to sleep with her. In KS I stretched and rolled and had my Service Dog and cat with me when needed and here NOT ALLOWED IN ROOM. Mom was ringing the phone on purpose and I asked her to stop yesterday and she told me to "get over it". I don't know how to get past this. I am taking maxium allowed dosage on meds so I knock out sleep. I woke up to the sound of my scream last sleep as I hadn't taken enough meds. Awesome post. I wish I could help myself feel better but I am in control of exactly nothing. I just found you today and am enjoying so much. Thank you. xoxo, Kandi Ann

Thank you for sharing this story, Dave. As a mother of a 5 year old girl with DS, it was really interesting to read this. Our children have so much potential.Rosaliethe BC Down Syndrome Centre, "Wonderfully Made"www.bcdsc.org

Thanks so much for sharing this Dave!! As mom to a 17 month old little boy with Ds, this a GREAT lesson and I AM taking notes!!! However, I am not surprised, I do KNOW that alot more is understood than credit is given for!! Warmed this mama's heart, and I will be sharing this with everyone:)

Was forwarded this post by a client's mother. Every speech pathologist needs to read this teen's perspective... What an amazing grasp on his own abilities; and so true about the way the kids (with DS) with whom I work learn things. As "Jackson's" mom told me right of the bat - "Once he gets it Miss Julie, he gets it." And he does...

What a profoundly simple statement from a perspective proportionately few of us will ever have. This young man was just being himself...at that point in time, no different from any of the rest of us. Thank you for your post.

Brillaint! Can I post this link (and a link to your blog) on my blog??????? You are wonderful! You write beautifully about things that matter. Thanks for making me smile today!Nancy Huggett, Ottawa(blog at www.dsbutterfly.blogspot.com)

A much needed reminder. I'm a mom of a 17 month old who has Ds and we've been having this dignity of risk conversation with her daycare teachers for a while now without articulating it quite so well. Thank you. I'll be back to read this repeatedly.

I found out about this post from Monica (Monkey Musings) - thank you so much for taking the time to listen to the conversation with the boy and his mom and to recount it for us. our little girl, whitney, will be 2 yrs old next week and it is good to get a peek at what is ahead of us and also great to know that the boy you wrote about gave such a great insight for others to know what is going on inside for him and what a great job he did expressing himself. GREAT story :)

Thanks so much for your post! I will remember it and recount it often I'm sure.

My son who has Ds is 5. We recently had a conversation about what he wants to be when he grows up...usually he says "Mister Rogers". This time he started the conversation by stating, "When I grow up, I be God". I explained that he can't be God and he said, "Okay, you be God! I be Rockstar!"

Hi! I'm Ty!I'm not sure I understand what Down syndrome is just yet, but Mom & Dad tell me that I have Down syndrome, too like the boy in your post. YAY for us! hahahaI do things because I'm Ty not because I'm the boy with Down syndrome. I hope people can see me and not my diagnosis or label just like the boy in this story.Thanks for sharing, your post made my Mom cry. Girls are so weird sometimes!I hope you pop by my blog to say HI sometime!www.tysadventures.wordpress.com

Thank you so much for this story. As a mother of a nearly three year old with DS, I also know that my perception of my son has changed so much since he was born. It used to be this huge thing about DS and a little bubble next to it was Brocky. Now the big bubble is brocky and the little bubble is DS. He is such a sweet, smart little man and I wouldnt change him for the world. I will retain this story for years to come and yes, thank you for giving me a good cry too, such an inspirational story. Thanks again xo

Being perceptive is a great trait--but I see that you're a Saggitarius, we're designed to be ever aware- nice post! My 5 yr old has Down syndrome, he is strong willed & independent. My mom aka Granny Jackie wants him kept on a very short leash...your story proves to me that it's okay to let up on the reins. I just took a position as a job coach for adults with disabilities-I need to always remember this story when it comes to aiding them at the workplace.Jayne in WI

Dave!I read this the first time over at BabyCenter.com, but there was no mention of you. Now that I found it and know it's you, I have once again linked you to my blog, and given credit where it's due. I'm thinking seriously about just deleting my posts and creating a link to your blog every day. It would be simpler. You speak to me.

Amazing how spontaneous a lesson may come to us, just by passive listening to others. There's a lesson here-listen more than talk, and listen to everyone.Afet several years of working with adults and children with DS it never occurred to me to ask how consciousness, or whatever you call it, appears to someone with DS-wow did I ever learn today.This blogg is absolutely awesome.

What a fantastic lesson! I have one, possibly two sons on the autism spectrum. We are just starting our journey and sometimes it is so difficult to see anything but the autism. I need to remember this post when I am having one of those days. Disabled, sometimes. I love it.

I as a mother who was blessed with normal, healthy children give the boy and his mother 2 thumbs up. I am so proud of the way it went down between mother and son that it should be posted on every web site there is. The world needs to be more educated on D.S. As for everyone who has this don't give up U can make a difference in the world today. That story was totally awesome. To all of u in the future I wish u all the best that life has to offer.

Thank you for sharing the story. As a person with a disability, I am sometimes angered by parents who stifle their children with disabilities. My parents always encouraged me to do what I could, and I am a better person from it. This boy taught his mother a valuable lesson!

Disability Pride

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About Me

Joe and I live in an apartment right smack dab in the center of Toronto. I have worked in the field of disability since graduating from university over 30 years ago. I became disabled a few years ago now and use a wheelchair when out in the world. For those interested, most of my books are available through www.diverse-city.com and if you are wishing to book a lecture or consultation you may do so by emailing daveandjoe@hotmail.com

Best Health Blog 2010

Requiem

There are those who have affected the course of my work and my career. I wish to remember them here:

Stella Young

Manuela Dalla Nora

Bob Clayton

Viktor Frankl

Robert Sovner

Marsha Forrest

Terry Haslam

John Money

Susan Tough

Sol Gordon

Winnifred Kempton

I believe that we should speak often and well of those who passed our way and whose lives gifted us. Here in this space I wish to memorialize those whose lived lives in service to those with disabilities.